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Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.
Top Ten Things Lost:
7. Financial Stability (I owe more than I will make in a year)
5. Joys - Hiking, Exploring Historic areas and museums, Photography
4. Music- Last concert I was able to attend was when I was 18; extreme noise, extreme temperatures, flashing lights, crowds all trigger an autonomic crisis; even attending a movie at a movie theater has about 50/50 odds of triggering a crisis
3. My Beloved occupation as a special education teacher
2. The entire life I had created for myself
1. My independence
Top Ten Things Gained
10. Self Respect
9. Knowledge on how best to advocate for myself and to refuse to be bullied by a white coat
8. Vast self understanding and appreciation
7. The knowledge of what true friendship really is, and what a rare blessing it is to experience it
6. Discovering just how incredibly loved I truly am
5. Losing all fear - I am confident in who I am, willing to put it out there, and if I fail then I get back up and try again because I have that opportunity
4. New Joys- Before this I would never even attempt anything in the visual arts, now I love exploring and do not criticize because I am doing it for the experience (although my skill level somehow greatly increased after getting sick); audiobooks for days when I have little energy; an even greater appreciation of music
3. A renewed appreciation for living in the moment and gratitude for the miracle of being alive
2. Insight into the experiences of my kids and what is asked of them on a daily basis, and just how amazing they truly are
1. Renewed Faith
Now I may hold a spontaneous pity party tomorrow, but I can guarantee it will not last long (those things are poorly attended and get pretty lonely pretty quickly, plus the atmosphere at those is so dreary). In the end, my life is not in my hands - I did not write my genetic code, I did not form the parts of my brain that can not coordinate properly, no more than a healthy person programmed their own genetics or shaped healthy organs. I am just living with the gifts I am given, accepting the challenges (I love a good challenge, a good dare), and discovering amazing beauty along the detours of life.
* When I say "And God Laughed" I simply mean God smiled at my humanity and my belief that I was in control like a Father smiles at a toddler proudly announcing "Me the boss", and then my life followed a different path - His path.
Little Bit: Why are you walking with that walker?
Me: Because my legs are not strong enough right now, so I need to use the walker to make sure I don't fall.
Little Bit (sitting next to me on the couch): Why do your toes point down like that?
Me: They are stuck like that for right now, sweetheart.
Little Bit: (wiggling her toes) Mine aren't stuck.
Me: That's right. But see, my toes don't move even if I pull on them.
Little Bit: How'd they get stuck?
Me: Well, I got sick and it made my muscles not work right.
Little Bit: How did getting sick make your toes stuck?
Me: Because of being sick my muscles don't work right. You have strong muscles, but my muscles in my legs and feet are not very strong and they get stuck.
Little Bit: Oh.
And with that, she hopped off the couch and proceeded to twirl into one of her frequent spontaneous dances. She can be as serious as an adult at one moment and then launch back into the joyful delights of being almost five. She has not yet learned to form stereotypes or prejudice, to fear difference or to not ask questions. She can entertain herself for an hour with nothing more than a willing audience and two flip-flops. God, I love this child!
My culinary skills have primarily consisted of the following: operating the microwave, stirring contents of a pre-packaged meal in a pot on the stove (i.e., macaroni and cheese, soup, cooking noodles, instant rice, etc.), scrambled eggs, grilled cheese, and dialing a telephone. I supplemented this with no-cook foods like salad, sandwiches, fresh fruit, and fresh vegetables and I survived through college and living on my own in Virginia. However, after having gone through an extended period of time when eating was basically impossible and I had the privilege of sampling the range of Gerber baby foods in Stages 1 and 2, I want to cook and savor foods. I also will never, ever again in my life eat mashed potatoes, macaroni and cheese (it made me so violently sick), applesauce, cream of anything soup, or anything pureed. I want to enjoy healthy meals and savor the tastes and foods I never thought I would be able to eat again when I was struggling to eat 1/4 cup of pureed mashed potatoes thinned with chicken broth. Thus, I have decided to learn to cook. My first successes unfortunately did not have the opportunity to pose for a photo-shoot. They were a sweet apple sauerkraut, an apple and beet salad, and sesame chicken. It all turned out delicious and there was no need for the fire extinguisher! Pictured above is last night's success, Italian Baked Tomatoes. They have a drizzle of olive oil, seasoned sea salt, oregano, pepper, garlic, and fresh grated Parmesan cheese. The garnish is Basil leaves (which is in the seasoned salt) for aroma and a touch of flavor. It was a wonderful meal, and easy to make!! It may take me longer than most other people, and I may have to make accommodations (like sitting down to do most of the cooking) but the results are just as amazing, if not more so for the extra effort! My next planned meal will be an eggplant and tomato augratin. Also, a huge bonus - I purchased all fresh ingredients for 6 meals this week for $80, which would have been $40 or less had I not needed to buy a stockpile of spices. It is even less expensive than the other meals!! Bonus! And I savor any new independence I can claim!!
This is a picture of what my new wheels will pretty much look like!! Yesterday was my appointment for my evaluation for a new wheelchair, and I am beyond excited for my new wheelchair! It will be an impatient 2-3 month waiting period as this chair, with all of its customizations and specifications designed just for me is going to be incredible. The change will be unbelievable, like going from a bicycle to a Mercedes-Benz. My current wheelchair has improper wheel position, which causes me to have to expend excess energy as well as soreness just to propel it, and I am fighting against both the wheels and the seat back with each push. New chair? Not a problem! The center of gravity will be properly aligned, with the wheels properly positioned, and the seat back designed so I do not have to struggle against it with each push. Custom gel cushion seating, custom cushioned back cushion, non tip removable wheelies, and custom leg rests that will actually help properly align my legs from hip to foot!! Tires that will not cause me to have to play damsel in distress in the snow this winter, and welded tie downs for safety on the bus. Oh, and the color rocks! It is a metallic purple plum color! Oh, and it weighs about half of this bulk of a monster I am using now!! If you want to see details, go to and click on the side links for things like color (plum craze), tires (the heavy duty tread at the top) and such. I am going to have a sporty, sexy, hell on wheels chair!
I don't want to sound like I am a saint, because I am as flesh and blood human as anyone else. Just yesterday I had a moment of sarcastic bitterness that escaped. For twenty minutes I listened to a young woman loudly and proudly describe in vivid, and lewd, detail to her friends how she was actively destroying her life and taking her three year old daughter along for the ride. As she skipped off of the bus and walked away, I could not edit the comment that came out. "And SHE gets the legs that work?!?" I use sarcasm and humor to deal with situations, like people who stare or ask rude questions. I have run into people with my wheelchair because they walked directly in front of me, having made eye contact with me but deciding I could stop for them and I was not about to wear the skin off my hands for them (there is no ABS on my wheelchair, sorry. And the leather on my gloves is expensive too.). But I don't want pity, or anyone to feel bad for me. I do want understanding, knowledge, accessibility, awareness, and some good old fashioned manners. Heck, if a girl can dream I would love to have people stop thinking that handicapped parking spots are also designated for the lazy. But save the pity. My life may be different, it may be hard, but it is so worth every second and so much more than what you see in a body in a wheelchair.
1) Tired- you could continue what ever activity you are engaged in for a while longer, but it would be more comfortable to sit down and rest; with proper motivation you can find the energy to get up and going again
2) Drained- you are mentally tired as well as physically tired and are uncomfortable unless sitting or reclining
3) Sleepy- you are nearing the point of needing to sleep, and activities are becoming difficult
4) Groggy- it is time to sleep, your ability to focus and concentrate is gone and you are comical to observers as you are "sleepy drunk"; this is a great time for those not groggy to engage you in a conversation and laugh hysterically at your answers
5) Exhausted- you may or may not be sleepy/groggy but it is a physical effort to move your body; you debate whether or not you really need to go to the bathroom that badly because of the amount of energy required to get there and back; you ignore itches because scratching them is an effort
6) Beyond exhausted- sitting up requires vast amounts of energy which you do not have, and you discover that odd body parts like fingers and eyelashes suddenly weigh a lot; Activities that involve movement are a joke and you long to be just tired. You watch enough TV and DVDs to reach a point of detesting most programs, and you actually wear out an iPod from overuse listening to music and audiobooks. Sleep does not change this state, you fall asleep beyond exhausted and wake up the same way - sort of like a really warped version of ground hog day. And there is not enough Starbucks in the world to create the necessary energy.
My energy levels fluctuate between days last month when I wheeled myself 1 1/2 miles home from the store to more recently when I have been bouncing between exhausted and beyond exhausted. I keep telling God that I have too many things to do to be tired, and He keeps laughing and reminding me that this whole thing is out of my hands. Sometimes it is a little annoying, the whole "God is always right" thing! It makes debating and arguing in prayer a bit one sided and predictable. Not that it stops me or anything though! :) Today is totally my fault because yesterday I pushed myself far beyond the limitations of my body in order to prove a point to myself in cooking dinner. The cost benefit analysis at the time said it was worth it, and I still agree. Besides, I am too damn stubborn to play by the rules of this body. I am still the one in charge here, regardless of the coup it is trying to throw on the government. But for today I am curled up on my bed watching DVDs and pretending that it is because I am that into them instead of being at level 6. :) Denial is more than a river in Egypt!
I, who have previously existed by the art of microwaving, heating packaged foods, and dialing a telephone, successfully made two complete dishes from scratch last night. One was a beet and apple salad with a homemade dressing, and the other was an apple sweet sauerkraut. Today I am making sesame chicken, since yesterday I forgot to allow for the marinade soaking time. Hey, the fire extinguisher was not needed and the food turned out to be not only recognizable but edible and enjoyable!! Only bad part is that I, who used to add garlic to a garlic pasta sauce, can no longer tolerate garlic very well with my funky touchy stomach. The tiny amount of minced garlic in the salad dressing tormented me all night long. :(
Tomorrow afternoon I am meeting with the representative from the wheelchair company to go over all of the measurements and necessary specifications for my new wheelchair! I am excited because I know very well how long this process can take and I am desperate to have a wheelchair that does not increase my pain. We will be able to figure out seating that meets my needs not only in terms of my spinal issues but in terms of supporting my hips to keep them from rotating so much, and a better leg rest system. In one way it is difficult though, because until now the wheelchair has been rented, not permanently mine. So in my mind I could hold on to some illusion that I would not need it for long enough to have to purchase one. While I have realized over time that this is not improving, at least not in any direction that will allow me to walk for mobility anytime soon, this just makes that very real.
Another harsh reality check is the fact that truly wheelchair accessible housing is not easy to locate. Most places I have found are designated for senior citizens and individuals with disabilities, with preference going to senior citizens. Is it so much to ask to be able to rent an apartment? One where I can reach things and fit my chair in doorways?
My brain just went kaput. I think it is protesting the fact that I fell asleep, then woke up around 2 am and was up until close to 4 am, then woke back up at 9 am. I was going to write more, but now I have no idea what that more was. Go figure!
Me: "Excuse me, please"
Boys: glance at me, then return to playing
Me: "Excuse me, Please!"
Boys: do not even acknowledge my presence
Me: Translating into Teenage language "I will run you over if you don't move"
Boys: rapidly move aside and allow me to navigate through
Apparently something was lost when I spoke polite adult English that became perfectly clear when I brought it down to a simple statement of the facts. They may not understand manners, but they do understand cause and effect - you move, you keep your toes; you don't move, I give you a one of a kind pedicure free of charge. Just like I had to helpfully explain to the teenager behind me in line that I could not move away from the counter unless they backed up and gave me space because my wheelchair has yet to get all go-go-gadget and fly, and the only way out was backwards. Apparently in his quest to own that video game immediately, this logic had escaped him. I was patient and gave him time to figure it out before pointing out that he could pay for his game if he would move for just a moment so I could backup. It was like watching a moment of revelation as this logic processed through his brain. I then made my way to Target to pick up a prescription (which they screwed up - I pity the pharmacist on duty when I go back tomorrow; this anger stage of dealing isn't pretty but I have checked off all of the others) and buy a new charger for my iPod because the other one had a loose wire. I also happened to end up with a new skirt, short sleeve cardigan, tank top, and hat. Go figure!! That translates into I may be stuck in this wheelchair, but I am going to have style and demand that the world see me and not just the chair. :)
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Good news, yesterday's preaching bus driver will not be an issue and I do not need to be concerned with him driving any of the buses that provide my transportation to/from PT or anywhere else. My final two comments on that incident (which really upset me, had me in tears, and left me feeling assaulted and violated) are "before you even try to touch a speck in someone else's eye you may want to check out the 2X4 in your own" and "Let he who is without sin cast the first stone".
Little children can sense what I lovingly call "fresh meat", someone new to their environment who may or may not play by the same rules that the other adults in their environment enforce. I was "fresh meat" and every single child in that class smelled it the minute I walked in the door, and within the first three days of student teaching each and every one of them tested me individually to see where my boundaries were and if I actually followed through on consequences. That was like enduring 12 midterm exams that are not graded on a curve, they are pass or fail, while trying to dance a highly orchestrated ballet in tap shoes blind folded. Peabody College may have been looked down on by the Arts and Sciences students, with the phrase "those who can do, those who can't teach" often heard, but I dare them to survive a day in an inclusive preschool classroom.
My favorite test came from a very well mannered little girl with deep brown eyes and a tender heart overflowing with love. However, she still felt the need to see if I was serious or if I could be manipulated. We ate "family style" which meant that we corralled all 12 children at two tables and passed dishes of food (teacher's serving, we do have boundaries for hygiene) and shared a meal. I had finished setting the table with "help" from two other students and helped guide each child through the handwashing process. Jasmine was the only one left who had not washed her hands, and she was intently sitting in front of the computer playing some alphabet game. The following conversation occurred.
Me: "Jasmine, it is time for lunch. Come wash your hands and sit down at the table."
Jasmine: "No, I am on the computer."
Me:"Computer time is over. It is time for lunch. Wash your hands please."
Jasmine: "No, I don't want to."
Me: "Your choice is to wash your hands by yourself, or I can help you. It is lunch time. What is your choice?"
Jasmine: "To play the computer."
Me: [I walk over to the computer and pull the power cord out of the wall, ending all computer games] "Computer time is over. So can you wash your hands by yourself or do you need help?"
Jasmine: [Her eyes grow huge at the fact that I calmly reached behind the computer and actually unplugged it from the wall. She was expecting a back and forth exchange of turning it on and off with the power button.] "Uh, um..."
Me: "Thank you for making the right choice. When you are done washing your hands, please sit down with your friends so we can have lunch.
Me: "Thanks Jazzy! We would have really missed you at our table!!"
I passed the test, and she never challenged me again. Now the number of thoughts firing through my brain during this exchange, which lasted at most 2 minutes (with time for her to make her choices), was astronomical. My poor brain was firing thoughts so rapidly that it began to fire protests back, basically random jolts of "you are in over your head" and "ouch, thinking hurts!". Jasmine was the first child to out and out test me, and so I was nervous - it was a test not just to earn her trust, but a test of much greater importance. If I failed, if I could not enforce a behavior in a three year old, then I was in for a very long, hard learning curve. Passing that test was the first hurdle, and it was the reassurance that I could do this. Thank God I did not have a crystal ball or I may have fled that room and never returned. :)
I also want to try to do a "Wordless Wednesday" with photography, but since I am currently relying upon dial up internet (do not even get me started on that, it is like comparing the 1980s car phone with an iPhone) I have no idea how nicely my computer will play. Beyond that, I may expand to themes, I may just continue to write as my life bounces along this wild path, or experiment with different styles. In my heart I am a writer, I have always communicated my emotions and experiences best in writing and throughout my belongings (half of which are still in Virginia - rather annoying) I have over two dozen journals, piles of paper with poems and assorted writings on them, CDs of writing, and odds and ends. Not to mention in my Childhood Memory Box I have journals and writings from when I was little. In high school I once wrote a paper defending cannibalism because we had to write an argumentative paper for or against an "-ism" but were told we could not do something easy "like cannibalism unless you support it". No one else in my class was willing to risk trying to write an argumentative paper supporting cannibalism, but I thought it sounded like an awesome chance to try writing like Jonathan Swift's essay using sarcasm suggesting eating the infants of Ireland to end the famine. I took up the challenge and wrote an awesome paper (great grade too), but the teacher kept it. I wish I had that paper. I also earned a lot of respect from my classmates and friends, although I think they were a little creeped out about being alone with me in a car on snowy Michigan nights for a while. :) Donner, party of 2?
I realize that this journal has contained a lot about my medical situation right now, and that is not the defining feature of who I am as a person. However, at this point in my life it is a huge obstacle that I am having to adjust to and deal with on a daily basis. Keeping a record not only helps me share information with friends and family, and express my emotions, but it also helps me keep straight all of the different things going on. I am still very much my quick witted, sarcastic, take life as it comes, independent to a fault, love to laugh, passionate, dedicated, dreaming, always learning Bethany that I have always been. The obstacles in my way have just changed temporarily. Instead of being up to my elbows in diapers and laughing as my students proved to me over and over that I was truly the student and they the teacher, I am up to my elbows in a medical quagmire and I am laughing as God is proving to me over and over that I am not in control and never have been. I am not a fan of that lesson, and we debate this often - but I lose, and he laughs at my silly willfulness. Hey, He designed me this way, attitude and all. I even occasionally debate with him the concepts of justice and fairness. He lets me yell all I want before gently reminding me that earthly justice is not the same as heavenly justice, and that life comes with no money back guarantees or warranty. That in a broken world, no one is spared. And he laughs gently when I admit that I know this but it still just sucks.
This post probably makes little sense, as it is just unedited free writing as I am curled up on my bed with a dish of frozen cherries (one of my favorite treats on earth!) and an assortment of my DVDs and books. It is real, it is straight from the heart, and it is my life. And it is well, it is well with my soul.
When you have multiple doctors in the same specialty (three neurologists, two cardiologists, etc.)
When the pharmacist asks you about the side effects and interactions of your medications
When the pharmacy knows you by voice on the phone and greets you by name when you pick up medicine
When your cell phone contacts have more medical numbers than friends and family
When you have to spell the name of your medical condition and explain it to highly qualified medical professionals
When you carry a notebook with a separate page listing allergies, medical conditions, and current medications because you are tired of writing it out at every office visit and trying to keep it all straight is a feat of mental Olympics
When the phlebotomist needs to sit down when drawing your blood because she starts to feel woozy
When you can take a handful of pills without a problem but choke on a chewable Flintstone's vitamin
When you know how to shower with an IV in your arm, oxygen tubing in your nose, and the inability to stand independently…and look forward to this as a semblance of normalcy
When you realize that crimping the IV line to set of the alarm works a lot faster than pushing the nurse call button, and you use this to your advantage when you have waited over 45 minutes for anti-nausea medication or to be allowed to go to the bathroom
When you can identify by taste more than 6 different intravenous medications (yes, you can taste IV medications - vitamins and Heparin flushes taste particularly nasty)
When you have no problem calling out a doctor and informing them that MD does not equate to Medical Deity
When you can keep track of the pecking order of physicians and have will keep them in line by reminding those with "just out of school egos" that they are still practicing with training wheels
When you do not hesitate to inform a nurse that he needs to get his butt back out in the hallway to wash his hands, then put on gloves before administering anything into your IV - and then discuss protocol with his supervisor
When the phlebotomist spends 20 minutes researching the lab tests that the doctor has ordered and calls their reference lab more than twice to determine what vials and processing are required as they have never run these tests before
When you can not watch medical dramas on TV because you critique their many errors (on Bones, when Booth was in the hospital, his vital signs on the monitor never moved…ECG tracings continually move, numbers fluctuate…very annoying)
When you prefer to self administer any injections, and nurses have commented on your technique
When the first question you ask a new doctor is "what exactly is your experience with individuals with complex, complicated, and rare medical histories?" and they must pass your interview before making "the team"
When the cost of your prescription medications alone each year is more than the average income of most middle class families (and you thank God for providing insurance coverage in any form because without insurance you would not exist)
When you can spell words like pandysautonomia and lupus anticoagulant and antiphospholipid syndrome without hesitation, but you misspell words like perseverance and righteous
When you know how many different objects can be made out of an inflated medical glove, a sharpie, and some paperclips
When you have perfected your aim at shooting the caps off of syringes and using syringes as water guns
When your blood pressure drops to 78/40 and you actually debate whether or not to go to the emergency room
When you can sit and write a list like this in under 5 minutes, and it is actually amusing
10. Yell when you talk to me (because apparently since I am sitting down instead of standing, I am also hearing impaired)
9. Ask me what grade I am in or when school starts again (because I am almost 28 years old and would love to securely pass for 18)
8. Tell me how well I "drive" my wheelchair ("thanks, you steer those sneakers pretty well too!")
7. Let your ignorance show ("what's wrong with your legs?" - nothing, what's wrong with your manners? or "why do your feet point in all pigeon toed?" - I'm a ballerina.)
6. Create a business that is not accessible due to stairs, aisles that are too narrow, inaccessible bathrooms, or products that are placed too high (I would rather take my business elsewhere than have to repeatedly play damsel in distress, it gets old quickly)
5. Assume that I have cognitive impairments and speak to me as if speaking to a three year old ("Someone is buying new shoes today!" Yes, and someone is going to put one of them up your arse lady! My IQ did not suddenly drop when I sat down in the wheelchair...there is no magic force of the seated position that destroys cognition. Besides, you work at Walmart, get over yourself! )
4. Help me without asking my permission (Pushing my wheelchair without asking me is like someone suddenly picking you up and carrying you - they may have the best of intentions but unless they are damn sexy, you would prefer to keep your own feet on the ground and remain in control)
3. Park in a handicapped parking spot when you have no legitimate need (Ignorance and Laziness are not disabilities, even though they are really annoying)
2. Stop and stare at me as if I have managed to escape from a circus sideshow (Really, have you never seen anyone in a wheelchair before? If not, you need to get out more! And if you have, they all work on the same principle, and like it or not us "damaged folk" are going to continue to use our rights, so suck it up and deal)
1. Walk or stand in front of me and refuse to move (I love playing bowling ball, and I have earned several strikes already)
So after his evaluation, he discussed his findings with me. Dr. A is certain that this is not a primary movement disorder like a primary dystonia or parkinsons. He is also certain that it is complex, complicated, and rare. His words "were you to present to us without any medical history and just your current symptoms, this would be a very complicated and difficult case. When you add in your history and the dysautonomia...". I saved him at this point and explained "I never seem to do anything simple. It is always rare, complicated, and an extreme challenge. Apparently it is against my genetic capabilities to follow a simple textbook anything." He laughed, but also agreed. So now that we know what it isn't, we are left with more questions. His opinion is that it is most likely something impacting my spinal cord given the presentation with my lower extremities, and he is concerned because I do indeed have increasing spasticity and tone in my upper back/shoulders which means that it is worsening. He mentioned a disorder called "stiff person syndrome" that they will be checking for by blood work, and also said he is concerned that the autoimmune disorder I was diagnosed with at 11 (and that has been greatly debated since then) could be attacking my spinal cord. He wants me to have a spinal tap, which is tricky given the fact that I am on blood thinners but actually better to do with me on the injections of lovenox than if I were taking coumadin. I have had a spinal tap before, about 9 years ago, and based on that horrid experience in which they missed and then ended up twisting the needle and as a result of their errors I ended up bleeding into the base of my spine I am going to agree only upon the condition of being unconscious. I can deal with the pain, but I find that adding unnecessary pain to an already painful life is unnecessary. Dr. A is now going to be a part of my neurology team, with Dr.CH as lead neurologist and Dr. SN as consult.
One huge success from yesterday was that I received an order for a new wheelchair. The one I have been using is a rent-a-chair that has horrible positioning and actually causes severe pain if I use it for more than an hour or two at a time. Part of this is because of my hip positioning in it, but mostly it is because I have occult spina bifida (the bones at the base of my spine are malformed) and the defect is a boney protrusion just below the layer of skin that receives pressure whenever I sit upright. I have not developed an actual open sore, but I have developed inflammation and scabs on this area from sitting. And as a result of the spina bifida, I have significant arthritis in my lower spine which also makes sitting on a poorly supported and cushioned surface painful. So yesterday after my appointment I went to the medical supply store and ordered a lightweight tilt in space manual wheelchair that could be here as early as Friday :) I had to call and have the Dr. fax them with detailed information regarding seating and/or cushions for seating but it should be taken care of as I have not received a call otherwise. New wheels!!! But to be completely honest, it was hard to order the wheelchair because as long as I was using a rented chair it left me with the illusion that I was only using it on a very temporary basis. Now that a wheelchair has been ordered and purchased for my personal use, it feels almost like surrendering a battle to this and admitting that no one things I am going to walk again any time soon if ever. That is hard, and it hurts. I am not giving up, but sometimes being hit in the face with reality is rough. So instead, I am going to figure out a way to make my new chair absolutely awesome - pimp my wheelchair anyone? :)
"You think that its not magic that keeps you alive? Just because you understand the mechanics of how something works does not make it any less of a miracle. Which is just another word for magic. We're all kept alive by magic... My magic is just a little different than yours, that's all."
HBO Series TrueBlood Season 1 Episode 3
Dr. CH: Primary neurologist, amazing doctor who has taken the time to call me after office hours to check on me and reassure me that they are working hard to try to figure this puzzle out, correctly diagnosed the dystonia
Dr. SN: Neurologist, works in the same practice as Dr. CH, specializes in neuromuscular disorders and genetic causes of neurological disorders, performed my EMG that showed nerve irregularities and is assisting in trying to identify the potential underlying genetic condition
Dr.A: Neurologist, another coworker of Dr. CH, specializes in movement disorders like dystonia, will be evaluating me tomorrow and offering his expertise and opinion to the process of diagnosis
Dr. C: Hematologist, perhaps one of the greatest doctors alive, I trust him implicitly with my life, both brilliant and compassionate, treats the blood clotting disorder (Lupus anticoagulant)
Dr. S: Sleep Medicine Doctor, also a very brilliant doctor, aware of the latest research, treats the narcolepsy/idiopathic CNS Hypersomnolence (my brain's inability to independently regulate the sleep wake cycle in anything like a normal fashion)
Pharmacists: They know me from my voice on the telephone or by a quick glance and go out of their way to be helpful, I think I probably constitute a good percentage of their monthly business :) I have finally found a pharmacy that is careful, helpful, prompt, and dedicated - key factors when you basically stock a miniature pharmacy at home
Currently missing from the line up but soon to be added are an internal medicine doctor, a cardiologist, a rheumatologist, perhaps an endocrinologist and psychiatrist (I fully admit to having dealt with depression as my life suddenly came to a halt, and I am not ashamed of this. In fact, the one question I have been asked by those in the mental health field most often since then was not why did I suffer depression but how did I manage to go 27 years without needing help prior to then :) the stigma is so dangerous because it keeps people from asking for help, sometimes until it is too late), and physical and occupational therapists.
By now I think some of my doctors have nice new cars courtesy of my insurance company and myself, and after the $40,000+ stay at GWUH in December, I think I paid someone's year of tuition in med school. :)
Also critical to my village are my friends and family who see beyond the superficial crap, beyond the wheelchair and the physical body and still see me for the person that I am. The people who love me, who make me laugh, who remind me on my bad days that it is normal to be angry/scared/frustrated but that I always "suck it up and deal" in the end because I love living too much, who believe in me. My parents, my family, my friends, my prince charming. They are better than any doctor or medicine, and they are my strength.
She peered at me with the appraisal of a child who is processing something new and trying to figure out how to make it fit into her knowledge of the world. As we waited for the elevator, she alternated between fidgeting with her toy cell phone and sneaking looks in my direction. To her five year old mind, I was a new encounter and she was fascinated but also trying so very hard to avoid being rude. I can only guess, but I would suspect that her past experiences with individuals who use wheelchairs has been limited to either medical environments (i.e. hospitals) or to much older individuals and at a very young looking 27 years old navigating the world independently I defied all known rules. I met her glance with a warm smile, and she shared her shy smile with me. I had to laugh as she repeatedly looked at me, in my wheelchair, and then a group of elderly individuals, some of whom were also in wheelchairs, as if playing the old Sesame Street game "one of these things is not like the other".
They stood before me blatantly staring at me, yet refusing to step to one side or the other of the aisle so that I could proceed. Their looks were not inquisitive in nature but degrading and repulsed. At about sixteen years of age, the four of them had the developmental skills to comprehend the fact that people have disabilities but apparently were lacking the social learning as to how to interact with people who were not just like them. My patience does not extend to ignorance, and so I offered them a simple choice: move or I will see just how many of them I can take out in one good roll down the aisle in wheelchair bowling. Apparently this made sense to them as they grumbled and shot dirty looks at me, but did rapidly discover that it is possible to walk without occupying the entire width of a store aisle. I do wonder if their little necks are sore from trying to stare at me behind them as they walked? :)
Three different ages, three different interactions, three different perspectives of me as a young adult who uses a wheelchair within the course of one day. Each one left me laughing, in a very different and unique way. Laughing at the innocence of a toddler, at the perplexed struggle to comprehend written on the face of a preschooler, and at the ignorant egocentric behavior of teenagers. Laughing at what it means to be human.